Symptoms & Sweat test

S

Stacia

Guest
Most of our children are treated with Steroids for the lung part of CF. Stacia doesn't have much lung problem but has all digestive. We take pancreatic enzymes for that problem plus Prevacid. She was on steroids about three weeks ago cause she was having such bad congestion and couldn't breath very well. We did get better for about a week and now we are starting all over again. I called the doctor on Friday and now we are back on the steroids again. Not sure if I answered your question or now.
 
S

Stacia

Guest
Most of our children are treated with Steroids for the lung part of CF. Stacia doesn't have much lung problem but has all digestive. We take pancreatic enzymes for that problem plus Prevacid. She was on steroids about three weeks ago cause she was having such bad congestion and couldn't breath very well. We did get better for about a week and now we are starting all over again. I called the doctor on Friday and now we are back on the steroids again. Not sure if I answered your question or now.
 
S

Stacia

Guest
Most of our children are treated with Steroids for the lung part of CF. Stacia doesn't have much lung problem but has all digestive. We take pancreatic enzymes for that problem plus Prevacid. She was on steroids about three weeks ago cause she was having such bad congestion and couldn't breath very well. We did get better for about a week and now we are starting all over again. I called the doctor on Friday and now we are back on the steroids again. Not sure if I answered your question or now.
 
S

Stacia

Guest
Most of our children are treated with Steroids for the lung part of CF. Stacia doesn't have much lung problem but has all digestive. We take pancreatic enzymes for that problem plus Prevacid. She was on steroids about three weeks ago cause she was having such bad congestion and couldn't breath very well. We did get better for about a week and now we are starting all over again. I called the doctor on Friday and now we are back on the steroids again. Not sure if I answered your question or now.
 
S

Stacia

Guest
Most of our children are treated with Steroids for the lung part of CF. Stacia doesn't have much lung problem but has all digestive. We take pancreatic enzymes for that problem plus Prevacid. She was on steroids about three weeks ago cause she was having such bad congestion and couldn't breath very well. We did get better for about a week and now we are starting all over again. I called the doctor on Friday and now we are back on the steroids again. Not sure if I answered your question or now.
 

Mbagley

New member
How long did it take to get the genetic tests back? They told me that they would have one done in two weeks and the more extensive would take a month. I really don't know which test we had.
Is there optimal living conditions for kids with CF? We are thinking of moving and wanted to know if that would affect Christian's health.
Obivously I don't know much about this.

Misti
 

Mbagley

New member
How long did it take to get the genetic tests back? They told me that they would have one done in two weeks and the more extensive would take a month. I really don't know which test we had.
Is there optimal living conditions for kids with CF? We are thinking of moving and wanted to know if that would affect Christian's health.
Obivously I don't know much about this.

Misti
 

Mbagley

New member
How long did it take to get the genetic tests back? They told me that they would have one done in two weeks and the more extensive would take a month. I really don't know which test we had.
Is there optimal living conditions for kids with CF? We are thinking of moving and wanted to know if that would affect Christian's health.
Obivously I don't know much about this.

Misti
 

Mbagley

New member
How long did it take to get the genetic tests back? They told me that they would have one done in two weeks and the more extensive would take a month. I really don't know which test we had.
Is there optimal living conditions for kids with CF? We are thinking of moving and wanted to know if that would affect Christian's health.
Obivously I don't know much about this.

Misti
 

Mbagley

New member
How long did it take to get the genetic tests back? They told me that they would have one done in two weeks and the more extensive would take a month. I really don't know which test we had.
<br />Is there optimal living conditions for kids with CF? We are thinking of moving and wanted to know if that would affect Christian's health.
<br />Obivously I don't know much about this.
<br />
<br />Misti
 

Juliet

New member
It's possible to have a borderline or normal sweat test and still have CF. Back when I was a teenager my sweat test results (54 in 1983) were interpreted as 'negative'. A repeat test in 2006 of 40 / 47 (2 arms) was also interpreted as 'negative.' In 2008 (at age 43) I was finally confirmed via genetic testing to have CF. One mutation DF508 would have shown up on the simple screening tests, but fortunately I had the full genetic mapping done. This identified 2 other mutations (total of 3!) - one was seen once before in one other gal with CF, the other was identified as a 'novel variant' never seen before.... or since, until my daughter was tested. She got the 2 rare ones (on the same chromosome) and is a carrier. Full genetic results took about a month to be completed. Best of luck. It sounds like the doctors are on top of the testing, especially if they ordered the full CF test and not just one of the simple screening tests.
 

Juliet

New member
It's possible to have a borderline or normal sweat test and still have CF. Back when I was a teenager my sweat test results (54 in 1983) were interpreted as 'negative'. A repeat test in 2006 of 40 / 47 (2 arms) was also interpreted as 'negative.' In 2008 (at age 43) I was finally confirmed via genetic testing to have CF. One mutation DF508 would have shown up on the simple screening tests, but fortunately I had the full genetic mapping done. This identified 2 other mutations (total of 3!) - one was seen once before in one other gal with CF, the other was identified as a 'novel variant' never seen before.... or since, until my daughter was tested. She got the 2 rare ones (on the same chromosome) and is a carrier. Full genetic results took about a month to be completed. Best of luck. It sounds like the doctors are on top of the testing, especially if they ordered the full CF test and not just one of the simple screening tests.
 

Juliet

New member
It's possible to have a borderline or normal sweat test and still have CF. Back when I was a teenager my sweat test results (54 in 1983) were interpreted as 'negative'. A repeat test in 2006 of 40 / 47 (2 arms) was also interpreted as 'negative.' In 2008 (at age 43) I was finally confirmed via genetic testing to have CF. One mutation DF508 would have shown up on the simple screening tests, but fortunately I had the full genetic mapping done. This identified 2 other mutations (total of 3!) - one was seen once before in one other gal with CF, the other was identified as a 'novel variant' never seen before.... or since, until my daughter was tested. She got the 2 rare ones (on the same chromosome) and is a carrier. Full genetic results took about a month to be completed. Best of luck. It sounds like the doctors are on top of the testing, especially if they ordered the full CF test and not just one of the simple screening tests.
 

Juliet

New member
It's possible to have a borderline or normal sweat test and still have CF. Back when I was a teenager my sweat test results (54 in 1983) were interpreted as 'negative'. A repeat test in 2006 of 40 / 47 (2 arms) was also interpreted as 'negative.' In 2008 (at age 43) I was finally confirmed via genetic testing to have CF. One mutation DF508 would have shown up on the simple screening tests, but fortunately I had the full genetic mapping done. This identified 2 other mutations (total of 3!) - one was seen once before in one other gal with CF, the other was identified as a 'novel variant' never seen before.... or since, until my daughter was tested. She got the 2 rare ones (on the same chromosome) and is a carrier. Full genetic results took about a month to be completed. Best of luck. It sounds like the doctors are on top of the testing, especially if they ordered the full CF test and not just one of the simple screening tests.
 

Juliet

New member
It's possible to have a borderline or normal sweat test and still have CF. Back when I was a teenager my sweat test results (54 in 1983) were interpreted as 'negative'. A repeat test in 2006 of 40 / 47 (2 arms) was also interpreted as 'negative.' In 2008 (at age 43) I was finally confirmed via genetic testing to have CF. One mutation DF508 would have shown up on the simple screening tests, but fortunately I had the full genetic mapping done. This identified 2 other mutations (total of 3!) - one was seen once before in one other gal with CF, the other was identified as a 'novel variant' never seen before.... or since, until my daughter was tested. She got the 2 rare ones (on the same chromosome) and is a carrier. Full genetic results took about a month to be completed. Best of luck. It sounds like the doctors are on top of the testing, especially if they ordered the full CF test and not just one of the simple screening tests.
 

JazzysMom

New member
The time frames you were giving for results sounds right, but it would help YOU if you knew which one was done. The more mutations they test for the longer it takes.

As to weather.....it really varies from person to person. We have people all over the world in all different climants.

I could never live in the United Kingdom with the constant wetness yet I could thrive in the tropics. I live in NY where we have seasonal changes. I use to think the Fall & Winter were harder on me, but now I am an equal opportunist as to when I will have problems LOL!

I seem to be the "oddball" when it comes to liking the humidity. I know many people have stated that it was harder for them especially if their lungs are affected greatly.

Keep asking ?? because if you get a confirmation of CF the more knowledge you have, the better of a start you have for your child!
 

JazzysMom

New member
The time frames you were giving for results sounds right, but it would help YOU if you knew which one was done. The more mutations they test for the longer it takes.

As to weather.....it really varies from person to person. We have people all over the world in all different climants.

I could never live in the United Kingdom with the constant wetness yet I could thrive in the tropics. I live in NY where we have seasonal changes. I use to think the Fall & Winter were harder on me, but now I am an equal opportunist as to when I will have problems LOL!

I seem to be the "oddball" when it comes to liking the humidity. I know many people have stated that it was harder for them especially if their lungs are affected greatly.

Keep asking ?? because if you get a confirmation of CF the more knowledge you have, the better of a start you have for your child!
 

JazzysMom

New member
The time frames you were giving for results sounds right, but it would help YOU if you knew which one was done. The more mutations they test for the longer it takes.

As to weather.....it really varies from person to person. We have people all over the world in all different climants.

I could never live in the United Kingdom with the constant wetness yet I could thrive in the tropics. I live in NY where we have seasonal changes. I use to think the Fall & Winter were harder on me, but now I am an equal opportunist as to when I will have problems LOL!

I seem to be the "oddball" when it comes to liking the humidity. I know many people have stated that it was harder for them especially if their lungs are affected greatly.

Keep asking ?? because if you get a confirmation of CF the more knowledge you have, the better of a start you have for your child!
 

JazzysMom

New member
The time frames you were giving for results sounds right, but it would help YOU if you knew which one was done. The more mutations they test for the longer it takes.

As to weather.....it really varies from person to person. We have people all over the world in all different climants.

I could never live in the United Kingdom with the constant wetness yet I could thrive in the tropics. I live in NY where we have seasonal changes. I use to think the Fall & Winter were harder on me, but now I am an equal opportunist as to when I will have problems LOL!

I seem to be the "oddball" when it comes to liking the humidity. I know many people have stated that it was harder for them especially if their lungs are affected greatly.

Keep asking ?? because if you get a confirmation of CF the more knowledge you have, the better of a start you have for your child!
 

JazzysMom

New member
The time frames you were giving for results sounds right, but it would help YOU if you knew which one was done. The more mutations they test for the longer it takes.
<br />
<br />As to weather.....it really varies from person to person. We have people all over the world in all different climants.
<br />
<br />I could never live in the United Kingdom with the constant wetness yet I could thrive in the tropics. I live in NY where we have seasonal changes. I use to think the Fall & Winter were harder on me, but now I am an equal opportunist as to when I will have problems LOL!
<br />
<br />I seem to be the "oddball" when it comes to liking the humidity. I know many people have stated that it was harder for them especially if their lungs are affected greatly.
<br />
<br />Keep asking ?? because if you get a confirmation of CF the more knowledge you have, the better of a start you have for your child!
 
Top